Happy Seventh Birthday to Let’s Kick ASS on September 18, 2018. ~ National HIV & Aging Awareness Day.

Our first town hall on September 18, 2013, was the beginning of a movement to empower, mobilize and unify HIV Long-Term Survivors (HLTS).

It was seven years ago a group of concerned HIV long-term survivors put together The Definition of Brave, our first town hall on September 18, 2013. (It was a pure coincidence it was also NHAAD.)

The first poster for the event in 2013. Hopefully, my amateur graphics have improved since then!

The Definition of Brave town hall took months of planning. It became clear and urgent after several deaths by suicide of long-term survivors. It was to be an exploration of living in the aftermath of the AIDS pandemic. The surprise was how great the need was. I remember thinking if we got 50 people I’d be delighted. Nearly 250 showed up! My life was about to change in ways I could never have dreamt.

Watch that first town hall below:

Deaths of Despair

In December 2012, New York AIDS activist Spencer Cox was admitted to the hospital and died soon after. The stories began on Facebook that after his death. His friends found several months worth of unopened HIV medications in his apartment. He has stopped taking his pills and knew better than anyone what that meant.

People were confused about what had happened. Why had had he given up. There was a flurry of articles speculating why. The New York Times published an article entitled Surviving AIDS, but Not the Life That Followed.

[embed]Surviving AIDS, but Not the Life That Followed In early December, the veteran AIDS activists Spencer Cox, Garance Franke-Ruta and Peter Staley had a reunion of sorts…www.nytimes.com

While his friends and activists wondered aloud, I thought I knew something about what pushed him over that edge. A few years earlier I had become obsessed with the idea of ending my life.

Dying young was my destiny, or was it?

I was told in 1986 I had less than two years to live. I began living my life as a guy who was dying. Every two years the doctor I watch my t-cells dwindle to 13 and lived for seven years with a baker’s dozen of T-cells. My personal struggles with the confusing complexities of survivorship began in about 2004. I was 45 began to realize the I might be an old man with HIV.

The one thing I had not planned for.

In 1993, I came down with Pneumocystis carinii pneumonia (PCP) when I had 300 t-cells. In those days we weren’t considered “at-risk for opportunistic illnesses” until we dropped below 200 T-cells. A close friend, Steve Beery, was diagnosed PCP at the same time. He died July 15, 1993, at age 40. I survived.

Steve was the closest person to me to die in San Francisco. I had lost nearly an entire social circle of friends in Atlanta, GA, where I lived before I moved to San Francisco in 1986. I also lived in the heart of the Castro so illness and death were omnipresent. The pages of the Bay Area Reporter were filled with pages of obituaries of young gay men who died too young. I lost a lover to AIDS in 2000.

From 2004 until 2008 I descended into a living hell. Nothing made sense. I began having horrific nightmares. That turned in insomnia because I was afraid to go sleep the dreams were too much. I was severely depressed, anxious and jumpy.

My neuropathy (nerve damage) in my feet was so excruciating walking was difficult. As the darkness descended I became furious. Angry at the world. I kidded myself into believing I was hiding my anger. I began alienating the (HIV-negative) friends I had because I was “too much to be around.

One (particularly clueless, now former) friend of over 20 years, LouAnne, sent me a letter ending our friendship and offering her unsolicited and “admittedly unprofessional” thoughts about what was going on. She speculated I might be using drugs (I wasn’t.) or I exhibited “classic signs of a personality disorder — borderline and/or narcissistic.” The bottom line she no longer wanted to be friends. She ended our friendship via email.

The loss of her friendship real blow at the time. She had been my confidant for so long, it felt like another major loss. This was a loss I could not reconcile she was not dead she just no longer wanted me in her life. She was as clueless as was I about the nightmare I was living but her off base speculations did not help.

I became obsessed with killing myself. I wanted to make it appear to be an accident. I live in San Fransisco. I would drive around the twisted roads on Hwy 1 imaging how easy it would be to make a sharp turn the right and go careening off the cliffs.

In 2005 I lost my job of 20 years and after a court date to settle on what my part of our LLC was worth, I lost the friendship of my partner and one-time lover. (The judge ruled I was entitled to far more of a more buy out than my ex-partner thought deserved. That relationship also ended very badly.)

I had unconsciously pushed everyone close to me away. I was profoundly isolated and alienated. I was drowning and no life guard was going to save me.

When I realized therapists were of no help.

I was seeing therapists, well they were “getting in their hours” on the way to becoming therapists because I could not afford a real therapist. They understood and were treating me for anxiety, insomnia, nightmares, and depression. They could not understand the larger picture — the reason for my version of a nervous breakdown.

The first guy I saw at an HIV clinic was not up for diagnosing me. Even though he was gay, the complexities survival were over his head. I knew it was bad when I was telling him about my life, so many deaths and the multiple losses, etc and the therapist began to cry!

I reached across the desk, put my hand on his arm, and said, “Honey, this is not how this works. YOU are supposed to be comforting me, not me consoling YOU.” I didn’t return to him again.

I found another therapist-in-training at a different clinic but she was not ready for me. Both therapists were young people. They had no clue about the prolonged trauma of surviving AIDS. I was the middle of it. I did not relate my upheaval to trauma. It was “just my life.”

It wasn’t until I was at the end of my rope that I saw a TV show about PTSD and returning Iraqi war vets. They checked off many of my symptoms but not all.

That’s when I had my Homer Simpson “Well, duh!” moment. Of course, I was traumatized. I set out to define AIDS Survivor Syndrome and began talking with other survivors who each said “I’ve been/ I’m going through something too. The town hall was the first indication that it was bigger than any of us imaged.

That night was the beginning. Since then I’ve heard from thousands of survivors who feel empowered by a definition that describes what they are going through. It also helps that Ron Stall at the University of Pittsburgh studied AIDS Survivor Syndrome and determined it was indeed real. He concluded that the focus should be less on definitions and on interventions. The amazing news is there are people meeting the challenge. GMHC is working on an intervention for AIDS Survivor Syndrome!

Here is a story about the Center on Halsted is doing an AIDS SURVIVOR SYNDROME SUPPORT GROUP to learn more:

http://www.centeronhalsted.org/newevents-details.cfm?ID=15841

[embed]Chicagoan helps put AIDS Survivors Syndrome in the spotlight - Gay Lesbian Bi Trans News Archive … Among the many effects of the AIDS crisis are the constellation of residual mental-health issues that can face…www.windycitymediagroup.com

Our Public Service Video:

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September 18, 2019, is NHAAAD